Unity Building Solutions has had the pleasure to have meet Cassandra, Matt, Kane and Blake Small, while servicing the needs of the storm related restoration work in the area. Through this time we have had the opportunity to hear the story of their journey over the last couple of years. It’s a story that you would not want to endure as a young family. Trying to comprehend the hard ship that Blake their son, now 3, has gone through when diagnosed with MPS1 at 6 months of age. The physical, mental, financial and emotional stress this family has gone through over the last couple of years is hard to understand when you meet this resilient family.
MPS1 HURLER I is a very rare metabolic genetic enzymedeficiency with 100% fatality. In simplified terms, MPS1 HURLER is where the “junk” in the blood cannot be broken down and eliminated from the body because of the missing enzyme so the “junk” build up in the joints, bones and brain.
The metabolic team were hoping that enzyme replacement therapy (ERT} could help Blake as it has been proven useful with reducing non neurological symptoms and pain but the government denied treatment for Blake. On top of all this trauma, Blake was also told he would need a Bone Marrow Transplant. They were fortunate that the metabolic team provided the funding. The extensive operations have proven a greater chance for Blake’s future, as walking was thought to have been unachievable without them.
Now 3 years old, Blake runs and this year he has enjoyed his first days at preschool. With 28 General anaesthetics to date, his struggle to achieve movement is evident.It is something most of us take for granted, but for Blake, gratitude can be seen through his huge smile and will for life.
Having been touched by Blakes strength and the family’s limitations both with finance and time to update and renovate their home, Unity Building has taken this opportunity to gather commitment from a wide range of Trades, Supplies, Services and local business to donate time, products and services to give the family a range of improvements including a new roof, new bathroom, and new kitchen all displaying Unity’s commitment to quality and fashion.
We are still in the planning stage of this project but please stay tuned as we will be sharing more information regarding Blake, The project and information regarding the businesses involved in coming weeks leading up to the project. Follow us on Facebook for updates: